Does anyone with Lupus ever feel well all day?

[flossy1]

I have, like a lot you, Lupus Sjrogrens, fibromyalgia, osteoarthritis, osteoporosis and nerve damage. I never feel well for a full day. Is this normal? x

[Rubylu]

Hi Flossy,

It won't take much trawling to see that many people on this forum have symptoms of one sort or another most of the time. Well days are precious.

You certainly aren't alone or odd, so browse through the threads and know you are not alone. Lupus UK have some excellent advice sheets for helping to manage most symptoms that crop up.

You'll find lots of empathy and tips here.

[flossy1 in reply to Rubylu]

Thank you RubyTuesday for your sound advice. I will certainly browse through the threads. it's good to know it's not in my head x

[tremarel]

Hi Flossy same here. Always feel the same , everyday rubbish ! Lupus, neuromyotonia, fibromyalgia, CVID kidney transplant , myostitis hip bursitis. Colitis The list goes on. Everyday is a challenge. I find weather patterns affect me greatly & today is one of those days. Can hardly move every part of me is hurting, so painful . Keep smiling & struggling on Flossy . All the best Hayley x

[flossy1 in reply to tremarel]

Gosh! tremarel you have a lot to deal with. Is it rainy damp weather that causes your pain to increase? X

[tremarel in reply to flossy1]

Oh yes it really does. But going from hot to cold & changes in drastic temperatures. I can tell what the weathers doing before I look out the window in the morning. I can hardly move . Lying in bed really hurts. Touching my skin , blinking all painful . Today is one of those days. So misty & damp this time of year here in the valley's of Wales. X

[flossy1 in reply to tremarel]

Hope you have a better day tomorrow. Xx

[whisperit]

Hello flossy,

Yep, that sounds normal to me. I had a whole week in April when I felt "normal" and the world was transformed. But otherwise, there is no time of the day when I feel well. Looking forward to next April perhaps ;P x

[flossy1 in reply to whisperit]

Hi Whispernet A whole week of feeling well sounds amazing. I'll think about you next April 🤗 Hope you have some good days before then though x

[Leave-me-alone]

smile on. When people ask me how are you now. My reply is 'as well as I can be'. My problem is when I have a good day I try to make the most of it and then rare myself out hehee. Nerves continue hurting on.

[flossy1 in reply to Leave-me-alone]

Hi Leave-me-alone. Love the name. I agree with you on the good days so so happy 😊 And then worn out for days😴😴😵😵 Xx

[Elise3457]

No I very rarely feel well all day.

[Wendy39]

It's so difficult isn't it. I have Lupus, osteoarthritis hip knees and back, varicose veins, allergies, slight hypermobilty etc. I have been on a new medication since April this year and I feel pretty good - in that I think this is as good as it will get for me with lupus and without steroids. I'm currently on Hydroxychloroquine, 3g MMF and mepacrine. My symptoms are much better BUT days where I am completely symptom free are rare. I might have good energy levels until 3/4 and then I want to collapse in bed. Or I might get a headache threatening and take hours to shift it. I might get lots of hip or back pain. I'm terrible at pacing myself in that when I feel relatively well I nearly always over do it. I can still have to spend one or two dats in bed to recover. Last week I had a reaction after seeing the dentist and I'm not sure if it was the lighting or the anaesthetic. Plus I'm sure I'm becoming intolerant to she'll fish. It's never ending. The best I have felt since diagnosis was when I was on steroids last year - two x 5 week courses of 20mg and tapering. I felt so good on that level. I felt like my normal self. But I'm not allowed to take them daily, my symptoms don't warrant the risks, as things currently stand. You aren't alone. I think we all get frustrated by the relentlessness of this illness! You've had great replies and I'm sure more will respond with the same answers. When I'm feeling sorry for myself I remind myself that others with lupus get far worse symptoms. I've come a long way and my meds do seem to be working. And there are others out there with cancer etc who are fighting for their lives. Stay strong. 💜 Wendy

[flossy1 in reply to Wendy39]

Hi Wendy39. I know how you feel. It's drives me mad some days it's so frustrating. I'm glad you're feeling a lot better on your new meds. Xx

[Hidden]

I have Sjögren's and Hashimoto's plus osteoarthritis . The last time I felt really well for a week was when I had my last period ever - in 2011. I did have heavy period pain but all the pain left my joints and tendons and I had lots of energy - weird eh?! I also had quite a few good months on Hydroxichloraquine before severe hives started up. Otherwise, like most of us here, I have many symptoms that take turns coming and going all the time and fatigue, facial pain and tinitus as constants.

[flossy1 in reply to Hidden]

Hi Twitchytoes. My problems started during the menopause. It was as though the light was switched off. One minute full of life and then nothing. 😵 I've had good weeks on Pred but I tend to overdo it and then back to square one. I don't seem able to balance my days. Hate it all

[Hidden in reply to flossy1]

Yes my last period was a one off in the middle of my menopause 6 years ago. Only difference was that I have never had good health and, looking back I think my Sjögren's started in childhood. But right enough this has turned my life upside down and I loath and detest it - especially as no one has ever heard of Sjögren's🙄

[flossy1 in reply to Hidden]

Yep same here. No ones heard of Sjrogrens. The nasty blighter causes me more hassle than lupus and Fibro. Hate it 😤

[leslieliesel]

I was doing fine today...until now..2PM..headache and tired..I am on Prednisone and anti Malaria(hydro...) so that is probably why I do not ache too